Please help save our Helen’s life

Pardon me if I ramble a bit. This is desperately hard for me to write. But maybe you or someone you know can help save our Helen’s life. I hope you’ll share it with everyone you know.

Helen Schwarz has worked as our administrative manager in the office outside my door for more than seven years, assisting me in the newsroom in everything I do.

She has been more than an employee to me. She was there for me when I had two stents implanted in my cardiovascular system. She was there again through each of my surgeries in the last two years, after I fell and badly damaged my hand, arm, back and shoulder.

Helen Schwarz, administrative manager in the Information Center, with her award for being the manager of the quarter for the first three months of 2013 for her work on safety issues.

She has shared many of the important events in her life with me, like when she was going to be a grandmother for the first time. She now has three beautiful grandchildren.

But she didn’t tell me one important thing: She is desperately ill from something I had never heard of called Polycystic Kidney Disease. She has reached what is called end-stage renal failure and could die.

She is in a race against time to find a living kidney donor; tens of thousands are ahead of her on the national kidney transplant waiting list for a kidney from a cadaver donor.

Her best hope is to find a living donor. Best would be someone with Type “O” blood. Her insurance would pay all the medical costs of any donor for the transplant, which – given what we are talking about – is a relatively simple process, medically speaking. I do not mean to minimize the risk or the gift; I was just surprised by what I learned.

Just a few weeks ago, I read in our church bulletin about someone needing a kidney. No name was given. I didn’t know it was Helen.

I found out about her illness quite by accident when the parent of a potential donor called the newspaper. Helen found out she has Polycystic Kidney Disease in 1980. She has been battling this genetic, inherited illness ever since. For all the time she has worked with me, she never let on.

“Nobody knew that I had PKD because people with PKD don’t typically look sick,” she said.

We decided to tell our colleagues during a meeting of the editors. She asked me to do the talking. Shortly into my talk, I started to cry. She had to finish for me. She was steady and calm, as always, almost as if she was giving a lecture in a classroom about what was happening to her body. She matter-of-factly explained how she could die.

That is, until she got to the part of about those grandbabies.

“I want to see them grow up at least through elementary school. I want to be their fun Grammy,” she said.

She said she would allow me write about her only if I promised to help educate the community about the disease and the fact that there are others in our community awaiting transplants, too. I don’t know the numbers, but based on the statistics there would have to be.

I wanted to tell her story because writing is the only way I know how to help.

So far, two potential donors have come forward, and both are now unlikely for differing reasons. Her hopes have risen and fallen both times.

Source: The National Kidney and Urologic Diseases Information Clearinghouse/National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health.

On her website, I read about how much pain she is in – all the time – though she very rarely lets on that anything is wrong. Until now, she always offered some other alibi for the few times she has been out of sorts.

“On a scale of one to ten, my pain is at a level of seven to eight most days, though I don’t let it show,” she wrote. “The pain is there whether I am working, playing or sleeping. In fact sleeping is difficult, as the weight of my kidneys make lying down very painful.”

I’ve been trying to learn more about her disease. As of about noon Sunday, some 96,975 people were in a national database of people awaiting a kidney transplant. Going that route could take five years or longer for Helen to get a kidney.

She doesn’t have that kind of time. And she doesn’t want to go on dialysis, which would mean multiple surgeries. When she tells how uncomfortable her brother was on dialysis, she squirms in her chair as if in pain from thinking about it. She might not have a choice to live.

“Due to the size of my kidneys, if I don’t find a donor, I may have to have a double nephrectomy and live on dialysis, and then when a kidney match is found I would have to undergo a second surgery for the kidney transplant,” she said. “This would be extremely difficult for my body, so we are trying to avoid this at all costs.”

With PKD, the cysts essentially take over the kidneys, profoundly enlarging them and replacing the normal structure and reducing function. Helen has reached a very advanced stage.

She has been working with the University of Maryland Medical Center. She is also hoping to be listed soon at the Florida Hospital in Orlando.

In 2004, before she came to work at the Tallahassee Democrat, she had three brain aneurisms caused by PKD and underwent surgery at Johns Hopkins. She told me about that; a brain aneurism killed my mother at the age of 58 some 21 years ago. One in four people with PKD have a brain aneurism.

Whatever happens, Helen is grateful for the time she has had since that surgery, trying to enjoy every day God has given her.

“These nine years allowed me to continue to work, watch my son become a firefighter/paramedic and my daughter get married to a wonderful man and bless me with three grandchildren,” she said on her website.

“Now nine years later my kidneys are failing and I need a kidney transplant and I pray that I can be blessed with another decade of quality life through a transplant.”

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About The Author

You can send comments by clicking on Bob Gabordi’s blog on Tallahassee.com or Move.Tallahassee.com, e-mailing him at bgabordi@tallahassee.com, sending a private message on Tallahassee.com and Twitter @bgabordi. You can also find links to his blogs on Facebook, LinkedIn and Google+. His mailing address is Bob Gabordi, Executive Editor, Tallahassee Democrat, P.O. Box 990, Tallahassee, FL 32302. His telephone number is 850-599-2177.